The Beginning of a Long Journey
The journey to understanding the needs of my oldest son, Ace, who was diagnosed with being on the autism spectrum at the age of nine was one full of intense emotions and moments of guilt and regret. Ace had always been a little behind in his milestones as a child – he supported himself, talked, walked, and he potty trained much later than expected. Ace kept to himself and enjoyed space. For instance, when he was just one year old, if I held him for twenty minutes or longer, he would begin to cry and reach for the playpen or crib. He was not very social, even with family and close family friends, and became easily overwhelmed when placed in unfamiliar or overstimulating situations. When he became overstimulated, I was under the impression he was simply throwing a temper tantrum because he did not get his way. I did not realize until much later that Ace was dealing with social anxiety and true overstimulation. I later came to understand that I was not helping him cope for lack of my understanding.
With the arrival of my daughter, Leilah, two years after Ace’s birth, and their little brother eighteen months after Leilah’s birth, that nagging feeling only intensified. They say never compare your children, and although I believe that for the most part, when your children are developing, that’s the time comparisons are needed to gauge their growth and development; to know their progress or regression. What are those percentile charts other than a gigantic form of comparison? As I watched my two younger children hit their milestones within a reasonable timeframe of the expected mark, as I watched them develop language with ease, and as my daughter became the voice of Ace, like saying, “Mom, Ace wants to know when we can leave” or “Mom, Ace said he is hungry,” I became certain an evaluation was needed.
Growing Suspicions
Around the time Ace turned two years old (when Leilah was about two months old), I began working part-time as the nursery attendant/supervisor at a local homeless shelter. Even when my third child was born, thankfully I was allowed to bring all three children to the nursery. I always have been grateful to see all three children grow and develop right before my very eyes, in a way not all parents are able to, especially to see them alongside their peers. The friendships they developed, the direct instruction I was allowed to give them as their “preschool” teacher, and the consistent and constant connections I made with them are gifts beyond measure. Over the years, however, I made several observations while working at the nursery that left a lasting impression on me, most of them having to do with Ace’s social skills.
Children ages six weeks to six years old came to the nursery while their parents attended life skills classes. The nursery was, as you might imagine, a space with miniature tables and chairs, a section of arts and crafts materials, dress-up clothes, a model kitchen, a television, an area with a plethora of toys, and an open space for kids to play or listen to a story. As soon as I began working in the nursery when he was two, the nursery quickly became Ace’s favorite place – not only because of the new and plentiful toys, but also because Ace had been an only child until that time, and he enjoyed seeing the children, even if he didn’t want to play with them. At the nursery, we enjoyed arts and crafts time, music time, snack time, storytime, and preschool-level learning such as numbers, counting, phonics, etc. The nursery provided the closest thing to a preschool setting as Ace was able to receive, and that was a wonderful thing.
The year Ace turned six, the decision was made to homeschool the children. It was also decided that I would continue working part-time at the nursery since I was allowed to bring the children with me to work. At the time the decision was made to homeschool the children, I wasn’t entirely sure how that would work with me being part-time in the nursery and my spouse (the children’s father) insisting I continue working outside of the home. After attending a homeschooling conference, the plan developed that I would continue working part-time in the nursery and homeschool the children when I was home from work, on the weekends, and over the summer, with small breaks throughout the school year, reflecting the structure of a year-round school.
Missouri law requires that there be a primary place of schooling, which was our home, yet the children were allowed to do some of their studies from an alternate location, such as a library, grandparent’s house, or a homeschool co-op (a group of families who share the responsibility of providing instruction and/or activities for their children). In the later years of homeschooling, I was even able to bring the children’s material with them and they could do some independent work in the nursery when we had a smaller group, which happened in the early morning and in the afternoon. Homeschooling my children and being able to bring them with me to work was the best of both worlds as they received the benefits of homeschooling and had a built-in social network at the nursery. It was during these social moments that some concerns grew as I observed Ace’s interactions in the nursery.
Subtle Observations
An observation I made about Ace early on was that Ace tended to play with children younger than him. If children close to his age were in the nursery, especially as he entered the years of forming language, he would prefer to play with the younger children or even the babies in the nursery. After seeing this for a couple of years, I realized he avoided children who were verbally expressive. I noticed when watching him interact with same-aged peers, especially after he turned five, that he did not appear comfortable with conversation and preferred silent or limited verbal interaction. His sister was the only peer he interacted with; however, he was accustomed to her mannerisms and she was often his voicebox. Outside of her, he always played with younger, non-verbal children in the nursery.
Something else I noticed about Ace was that from the time he was two years old if the nursery was arranged differently than how I had left it the previous night or over the weekend, Ace would put it back to exactly how I had set it up when we were last there, even if an entire weekend had passed. And not only had he memorized the setup of the room at two years old, but he also displayed extreme frustration at the change of arrangement. Like, he would walk around the nursery, put things back in place, and grunt and sigh with frustration. This happened every time there was an adjustment to the nursery’s setup. Every. Time. This happened for a few years.
One of the more stereotypical observations was how Ace sorted toys by kind, color, and shape. He would take care and line them all up, even if there were 30 or more of them, and he would separate all the blues from the reds, the small ones from the large ones, and he had an order which suited him, but it was very structured and nothing could be out of place. Once when he was four, Ace took all of the magnetic alphabet letters, found a checkered scarf, and proceeded to place both uppercase and lowercase letters perfectly within all of the squares on the scarf. When he was finished, it looked like a poster you could find in a store or school.
These observations (combined with his delayed speech, being easily overstimulated, and finding comfort in routine) made me certain that his pediatrician would determine that Ace was on the autism spectrum. I was mistaken.
Reaching Out for Help
I reached out to our pediatrician around the time Ace was three and a half, and again a year later, after many observations of his interactions in the nursery as well as at home with us. I explained that I suspected Ace might be on the autism spectrum. I had read articles in parenting magazines by this time and had spoken to other parents and discovered similarities in behaviors Ace displayed. When I brought up my concerns to his pediatrician, I was met with the following two questions: does he follow two-step instructions; and can he communicate with you, even non-verbally, his needs? The answer to both questions was yes, so I was told my son was likely not on the spectrum. I was told every child is different and they will progress at their own rate. I was not inclined to believe this doctor as they had missed a separate diagnosis of Ace when he was four months old, therefore my trust levels in this doctor were quite low.
When Ace was four months old, I noticed his head seemed to be flat on one side; holding him frequently to nurse him and constantly wanting to hold him since he was my first child, I felt certain that his head was misshapen, yet his pediatrician told me there was nothing wrong with him. I had grown accustomed to looking up medical concerns before going to the doctor – for myself and for my son – as a way of having some idea of what might be happening before speaking with the doctor. I had already looked into my own concern and learned that plagiocephaly was a condition that happened to some babies. I brought up this concern to his pediatrician no less than five times to no avail until Ace turned nine months, at which time the doctor pointed out his flattened head and recommended we begin the process of getting him fitted for a helmet to reshape his head. I was furious! How could my concerns be ignored for five months, which resulted in me questioning my own observations and concerns for my firstborn son, to then be told I was right the entire time? And for the doctor to even handle it as if they had discovered this about my son, not even acknowledging the concern I had raised for several months?
With the plagiocephaly and now the AS concern, I left the children's pediatrician and began taking all the children to my family care practitioner. Unfortunately, five years would pass before I was able to have Ace evaluated and diagnosed with being on the autism spectrum.
Where to Turn?
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